Chronic renal disease is a progressive loss of kidney function. Over time the inner structure of the kidneys become less able to filter the waste products in the body. Kidney failure can go on for an extended time without symptoms. Over one thousand Americans a year could be experiencing chronic renal disease without being aware that their lives are at risk.
If you have been diagnosed with high blood pressure or diabetes, you are indeed at risk for developing chronic renal disease that can lead to total renal failure if not diagnosed and treated. More information can be found in the article, Are You at Risk for Chronic Renal Disease?
Last year, my husband started having problems with retaining fluid. His legs suddenly became swollen and painful. His job requires him to be on his feet all day and he kept ignoring advice from family and friends to go to a doctor. When simply walking across the room became unbearable due to the swelling and tightness, he made and kept his first doctor’s appointment in over 3 years.
In the doctor’s office we were told his blood pressure was extremely high (210/96) and he could have a stroke at any time. His blood sugar was also high but not as serious, at this point, as the blood pressure. He knew his is diabetic, but, like many individuals, stopped taking his medication because he didn’t feel ill and believed the dietary changes he had made earlier had his blood sugar well under control.
His doctor started him on medication for high blood pressure, cholesterol, and diabetes and we were told to come back in a month. It was at the follow-up visit that a concern over kidney function results was first mentioned. When further lab work showed abnormal values we were referred to a renal specialist.
Imagine our shock to hear the word, dialysis during our very first visit. Sadly, further testing confirmed the quick progression to kidney failure and we are now in the process of preparing for dialysis treatments.
Kidney failure is not reversible. The options for treatment are dialysis or a kidney transplant. Even a transplant is not a cure. After a kidney transplant anti-rejection medications will be needed and they bring other side effects and need for continual monitoring.
Over the past four months we have been struggling with the knowledge that it is no longer a question of if dialysis will be needed, but when treatments will need to begin.
When faced with kidney failure and the need for dialysis there is an overwhelming amount of information to sort through and options to consider. There is no way to deal with all concerns and probabilities at once. Taking one day at a time we are dealing with the challenges of insurance and work schedules first as time will be needed for surgery to obtain a dialysis access. After the recovery period from surgery there will be adjustments to be made that come with dialysis treatments three times a week for an average of four hours per day.
Every day there seems to be more information to seek out and as one question is answered, more are raised.
• What adjustments to work will be needed?
• Will he qualify for disability?
• How do we apply for Medicaid or Medicare?
• How can we balance his dietary changes with meals for the family?
• Which of his doctors handle which medical emergencies?
• Which type of dialysis is better?
• What is the difference between hemodialysis and peritoneal dialysis?
• Is in-home dialysis an option?
Finding the answers to these questions and more is not easy. Finding the right people to ask, as well as knowing what questions to ask, is the first hurdle we needed to overcome.
Assembling a Team
We stumbled around for months trying to handle these questions on our own. Finally we realize a team could help us know what questions to ask as well as help find the answers right for us and our family.
A healthcare team can answer questions concerning medications, treatments, activity levels and diet. A social worker or someone familiar with insurance and disability issues can help make sense out of that mound of paperwork. We also realized the need for social and spiritual support as well and made the decision to share the news with our church family and friends.
One day at a time, once decision at a time, with the help of our health care team, family and friends we will make adjustments as needed. While this journey is not one we planned, we do plan to make the best of each day we have together. Perhaps by sharing our experience and discoveries along the way others finding themselves dealing with chronic renal disease and kidney failure will realize there is no need to struggle alone.